World Cancer Day

Family cancer experience informs eHealth company

By Jenni Spinner contact

- Last updated on GMT

(Dr_Microbe/iStock via Getty Images Plus)
(Dr_Microbe/iStock via Getty Images Plus)

Related tags: Cancer, Leukemia, Epro, Clinical trials software, Clinical trials

The founder of Andaman7’s leukemia diagnosis, and his son’s experience with bone cancer, have helped inform the firm's tech and patient-centric approach.

When a life-sciences tech outfit is looking to build new product offerings or refine existing tech, their work can benefit from drawing patient points of view and experiences. That’s something that Vincent Keunen, CEO and founder of Andaman7, knows all too well—in 2007, he was diagnosed with leukemia, and his son with bone cancer just three months later.

Outsourcing-Pharma (OSP) recently spoke with Keunen (VK) about his family’s experiences with cancer, and the unique perspective patients can offer clinical trials and their technology providers.

OSP: Clinical trial technology is evolving rapidly; why is it important that vendors keep patient centricity in mind while they’re developing their next-level tools?

VK: Being patient centric helps with:

  • Patients being engaged in the current trial = reduce dropout rates, which has high costs to sponsors of trials, and could lead to trial cancellation in worst cases
  • Data quality: when patients feel they are taken care of, they will take the study more seriously and thus improve the quality of their replies thus quality of data
  • For longitudinal studies, i.e. studies during a long time, or multiple studies with the same patient, being patient centric also helps keep a good relationship. 

In the case of Andaman7, the system is very​ patient centric since it offers a full personal health record (PHR) that the patient can use even outside of the clinical trial for their own benefit. And the data is stored on the smartphone of the patient and never shared unless the patient consents explicitly and has some action to share.

OSP: Do you feel companies behind these technologies fall short? If so, how?

VK: Most companies are attracted by the “data gold rush” and thus focus a lot of energy on collecting as much data as possible. Therefore, the temptation to “force” users to share data or to collect data without saying it explicitly (or hiding the information in small letters in a privacy policy).

At Andaman7, while we recognize the benefit of collecting data for research and even sometimes for common good, we believe that the individual should be omnipotent to make the decisions about their data.

This is why we say that Andaman7 does not collect and sell data but Andaman7 offers a way to access patients that, then, will decide if they wish to share data; it’s a complete reversal of the situation: the patient is in power. We do this because we are patients first and we strongly believe that patients in control of their data will be willing to contribute to the common good and thus medical research.

OSP: Could you please share the ‘elevator presentation’ description of Andaman7—what it is and does, key features and capabilities, and what sets it apart from other solutions in its category.

VK: Andaman7 is the most advanced platform to run your decentralized or hybrid clinical trials. We make it easy to collect digital data from patients while complying with the GDPR and HIPAA. Besides privacy regulations, Andaman7 is also validated for FDA 21 CFR part 11 and EU Annex 11.

Andaman7 is extremely flexible: we can start a study three to six times faster than current solutions.

OSP: You mention yours is the only system to include a full personal health record; could you please share some details on why this is useful? What are the chief benefits of this approach?

VK: The inclusion of a full PHR is very useful for patients first: they can control their health data and will use Andaman7 for all their life. They will accumulate a large amount of information over time. This will keep them engaged in the Andaman7 community.

It will also be very useful to medical research because the amount of data available to a trial or to a RWE study (or any kind of post market or quality of life study) will be much larger over time, while still respecting patients' privacy and will. The data will also be of higher quality.

The data will also be more correct (up to 30% of hospitals EHRs data is wrong and most patients can fix those errors when they access their EHR). In a system like Andaman7, all data, whatever the source (hospital EHR, laboratory, family doctor EHR, nurse info, physio info, data from connected devices, data from other apps, data from the patient…) is stored in a normalised schema less database.

OSP: You and your son have experience with challenging diseases; can you share any ways in which these first-hand experience with the conditions and the healthcare system have informed Andaman7’s development and features?

OSP_Andaman7_VK
Vincent Keunen, CEO and founder, Andaman7

VK: Two important elements became very obvious during the difficult period we went through.

First, your health data is scattered in many different, incompatible systems (various departments in a hospital, in various hospitals, in several lab systems, in your family doctor system, on paper at your parents’ place for info when you were young…). It’s just impossible to have a global view on all one’s health data, which is a nuisance for both doctors and patients.

One must realize that when meeting a new doctor, they ask patients about their health conditions, allergies, drugs…therefore, a very large part of the data that the doctor inputs in their EHR comes directly from patients. That’s one reason why it’s critical that patients have access to all of their health data.

Other reasons are: to have data with them on holidays or on a business trip, to be able to ask for a second advice, to share with family members (in difficult health situations, patients have a hard time understanding all the medical information they receive), etc. That is one of the reasons why Andaman7 was built as a full PHR, with all data stored locally (for privacy, for security and because internet is not available everywhere, cf less developed countries, rural areas, inside a hospital,...)

Secondly, the outcomes of my son’s and my cancer were very different. It was very easy to manage for me (no chemo, no difficult treatment: only a very efficient pill, with no side effects), and very hard for my son: one year tough chemo, radiotherapy, bone marrow transplant and amputation of his right leg…

Hence the idea to share patients benefits and needs of the medical research industry, which is to collect quality data on a permanent basis. With more data, there is more, cheaper and faster research, thus new targeted treatments. With such a targeted treatment for Ewing sarcoma, my son would still have his leg.

OSP: You mention the system’s attention to protecting security and patient privacy. How does your system accomplish that, and why is that important (beyond legal requirements)?

VK: All the data is stored locally on a smartphone (with backups mechanisms available to patients, see our FAQ). There is NO medical data in the cloud.

The staff at Andaman7 does not have access to our patients’ data. The system was built this way: “security by design.”

Also, no data is shared unless a specific action is done by the patient and explicit consent is given by them: “privacy by default”. Beyond legal requirements, this helps build trust, which is essential in the healthcare sector.

OSP: You bring up an interesting point about the disparity between the American and European sectors. Could you please elaborate, and comment on how that might influence the development of technologies you offer?

VK: I don’t think there is a huge difference in the intrinsic quality of care. The financing is very different, however.

In Europe, most countries are based on a contribution by each via taxes (social security cost) that help pay for healthcare for those that need it. In the USA, the approach is a lot more individualistic and run by the private sector.

My treatment costs 2000€ (about $2,400 USD) per month and the typical cost of a chemotherapy is over 100,000€ (about $120,000 USD). So, whatever the system, an individual can not sustain the cost of healthcare in some situations.

Therefore we need “solidarity” systems, whatever the approach. It’s clear there are pros and cons to both systems. I don’t do politics.

There is also a different sensibility to privacy. Europeans are a lot more cautious with their private information while in the USA, big tech companies using a lot of private/semi-private data as the core of their business model have a tendency to reduce the privacy of citizens. However, as surprising as it might look, GDPR-like approaches are more and more developed by various countries (California Privacy Rights Act in 2020, Brazilian General Data Protection Law 2018, etc).

OSP: Is there anything you’d like to add about your technology, company, etc?

What we are trying to do at Andaman7, is to both help patients get in control of their health data (at no cost) and get revenue from B2B projects with medical research, hospitals, etc. to cover the costs of building and running a platform like Andaman7.

We chose a classic “for profit company” approach vs a “foundation” so that we could attract private investors and shoot for the moon: Everyone has the right to good health and well-being of himself and of his family (Article 25 of The Universal Declaration of Human Rights).

We believe such an approach can do well and do good at the same time.

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